24 March 2007

I first ‘contracted’ rheumatoid arthritis (RA) 25 years ago, in my late 30s. RA is an autoimmune disease and it isn’t known what causes it. It comes in various forms and mine was called ‘sero-negative’ RA, presumably because I didn’t test positive in some blood test (in those days one’s consultant didn’t expect the patient to become expert in his or her condition). I suppose that means it was a relatively mild form of the disease, and I didn’t go on to develop the witch’s claw hands which are typical of the worst kind, although I was left with a few stiff and bent fingers and one wrist which doesn’t bend. When the disease arrived though, it was devastating, and threatened to wreck my life. The way I came to deal with it: my ‘diet cure’, certainly took my life in a new, mainly positive, direction.

Before the RA arrived my life was very rich. I was a senior manager and Chief Systems Analyst in a large computer department. I was a single mother of two young girls and owned my own house. I had a lover (not live-in, which I preferred), also named Chris, who was good-looking and ten years younger than I was, and a fellow comrade in the Socialist Party of Great Britain (SPGB), so I was an active and committed Marxist socialist into the bargain.

One morning I woke up with a pain in my right thumb. When I got to work I found I could barely write because gripping a pen was so painful, and this was a big problem because my job involved trotting off with my clipboard and interviewing the users of our systems, and then writing up the findings; in those days we didn’t do our own word-processing. Of course I went straight to my GP, and he recognised the urgency and suggested a private referral to a consultant rheumatologist. This man recommended a huge dose of aspirin, pending attendance at his clinic. By the time that appointment came through, the pain and inflammation had spread through much of my body, including my feet, and one morning I had to go out and buy some absolutely flat and soft sandals because my high-heeled business-woman’s shoes were too tight and caused excruciating pain. At the clinic blood samples and X-rays were taken, and the aspirin was replaced with powerful anti-inflammatory drugs. The dose must have been excessive, or I was sensitive to one of the drugs, and one day at work I collapse and was taken to hospital. My consultant was called, and seemed to take this as a personal slight. He was arrogant and unsympathetic to my wish to understand my condition, and I asked my GP to get me transferred to a different consultant, a woman, as it happened, and much more personable. By that time, since the drugs did not dispel the pain and stiffness, I was coping by getting up very early to get my hands loosened up with alternate very cold and very hot water. In the evenings and into the early hours, I painfully wrote up the meagre notes I had managed during the day. My new consultant really took this problem on board, and she gave me steroid injections in key finger joints and wrist of my right hand. These are the exact places I still have damage, having taken over from these consultants and cured myself of the disease, with the aid of a diet.

Before coming to how I cured myself, it seems important to say what kind of person I was before the disease hit. I was very strong and energetic, taking pride in coping with whatever life threw at me, which was quite a lot, what with two failed marriages, three children, custody battles, and the challenges of my working life, at the office and fitting work and home life together. I was intolerant of people who didn’t seem able to cope. I was emotional and passionate, highly articulate and with strong views on what is wrong with the world and how to put it right. I was brought up rational, atheist, pacifist, socialist, environmentalist, and educated in maths and science. I had a strong faith in scientific method and assumed the efficacy of properly-tested conventional medicine. So to find that there is no ‘cure’, as such, for the disease I suffered from, and little understanding of what caused this thing to happen to a previously perfectly healthy human being, was deeply shocking. The emotional trauma that came with the disease was as bad in its way as the pain and disability.

OK, now to the ‘cure’. I feel the need to put ‘cure’ in scare quotes because the word is associated with something applied from outside: ‘there is a cure’, ‘I was cured by so-and-so’, ‘so-and-so cured him/her’, as if the person cured, the ‘patient’, is a passive recipient of this ‘thing’ called ‘a cure’, or has curing done to him or her by someone else. To the extent the patient puts something of him/herself into the process, this is dismissed as a ‘placebo effect’, and any treatment not recognised by orthodox medicine is judged impotent at best, apart from the same placebo effect.

I don’t entirely dismiss this subject and object perspective, but relating what happens in those terms should be coupled with an awareness of its dangers. This kind of language is unavoidable – and one could digress into exploring its origins in empiricism or whatever – so it is best to use it, but with a caveat.

What happened was, my nice, friendly consultant next offered me gold injections, and this seemed such a peculiar idea that I investigated it. We didn’t have the internet or Google back then, so the source was medical reference and text books. I didn’t like what I found. The potential side-effects were horrendous. It was not known how or why it sometimes seemed to work, which seemed more like shaking or kicking a device to get it going than expert attention. So I began to look around for ‘something else’. My comrade-cum-lover, Chris, had a flat-mate, Lynne, who had also been in the SPGB, but had moved on into exploring spirituality and personal growth, provoking scorn and mockery from her erstwhile comrades. She and I became friends and she got me – very cautiously – interested in alternative perspectives on health. I tried all sorts, some curative, like acupuncture, which was dramatically unsuccessful, and I can still see the highly trained and expert Chinese practitioner, Be Lian Sim, I think her name was, standing at her door watching me hobble down the road even more painfully than I had hobbled in. Other approaches were psychological cum spiritual: a difficult and traumatic group thing called an ‘Enlightenment Intensive’, wacky stuff like ‘Rebirthing’ and ‘Mind Clearing’. And I began to change inwardly, to drop the strong, coping, intolerant person I had been, in favour of – how to put this? – ‘a self-aware seeker’ will do, but it was a mysterious process.

The self-aware seeker acquired a new expectation: that she was responsible for her body, so any ‘cure’ had to come from inside as much as outside. Diet was an obvious area to try, and I tried a vegan diet, a raw diet, then fruitarian, and I stopped taking the drugs. The pain and inflammation got worse, much worse, but I felt better. An important component of this was my lover, Chris, who fancied me, but showed absolutely no sympathy, which was great, because it meant I was other than a sick person.

I was ready at this point for what happened next. The new friends I had found through Lynne used to participate in the Festival of Mind, Body and Spirit, held each year at Olympia. I went. Much of what was on offer was still too wacky for me, but there was a book area, and within that a section on diet, and I found a book called The Arthritics Cook Book, by a Chinese American rheumatologist who had suffered from RA himself. Puzzled by the recollection that he had never seen RA – or arthritis of any kind – in his home village in China, he began to try out a diet of rice, fish and vegetables on his patients. The book was half this story and case studies, half cookery book, with recipes for dishes using only the permitted ingredients. To cut the rest of this long story short, I adopted this diet and within weeks my symptoms vanished. I was so thrilled, I made an appointment with my consultant to tell her about it. She was completely dismissive, saying I had experience a ‘temporary remission’. She suggested I go back in a few months time to see how I was, and when I went she showed me an article in her ‘trade mag.’, Rheumatology Today, about the Dong diet, describing a very limited trial which ‘proved’ that the diet did not work. Twenty-five years on, there is some acceptance by the medical profession of diet being helpful for arthritis sufferers, and the Dong diet gets some mention, but still dismissively. In a way I agree that it is no ‘cure’ on its own. It is extremely difficult to stick to rigidly, as I found I had to, otherwise the pain and inflammation returned – which is how I knew this was not just a temporary remission that happened to coincide with my adopting the diet – and the inward change, the taking responsibility as a ‘self-aware seeker’, was a crucial part of becoming well.

I have always been a political person, and I have a political perspective on this as I have on most things in life. My hope is that in a future socialist society, resources which currently go towards curing disease will go towards prevention. This can be done. In dentistry it is now recognised that prevention is better than cure, that teaching someone to take responsibility for oral hygiene and avoiding harmful drinks and foods is better than extracting or filling teeth damaged by dental caries or gum disease. One crucial aspect of the Dong diet is that it can be effective on wear-and-tear, osteoarthritis, as much as on RA. The parallel here with current thinking on dentistry is that instead of waiting lists for joint replacements – the equivalent to dentures – resources could go into helping people to adopt a healthy lifestyle such that they never get osteoarthritis, and for those who missed the boat on that one, helping them to heal themselves with the aid of curative diets.

Colin H Dong M.D. and Jane Banks, The Arthritics Cookbook (New York: Bantam, 1980)

Colin H Dong M.D. and Jane Banks, New Hope for the Arthritic (New York: Ballantine, 1980)

Sequel: Diet cure 2 27/3/07

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